I have a little tradition to search for handmade jewelry when I travel, usually rings or earrings. It’s my favorite way to bring home a piece of where I’ve been. Since I just visited New Mexico for the first time to join my family in celebrating my cousin’s wedding, I was especially excited to see what I’d find because I love southwestern jewelry designs. My mom (who also uses a wheelchair), my dad, and I ventured to Old Town in Albuquerque one afternoon to look around and when we reached the first shop, Native Gallery, I was immediately drawn to rows of earrings and beautiful pottery.

Not even 10 seconds after entering the shop, I gravitated toward some rainbow bowls in the front of the store and was already contemplating buying one when the shopkeeper came over to my family and said “there’s no room for you here.”

Mind you, the aisles were a bit narrow but I have the depth perception to know my wheelchair would fit through and the common sense not to drive like a wild woman through a store full of valuable breakables. There was undeniably room for us. So, I began to explain that we were fine and would be very careful, but the shopkeeper again insisted there was “no room” for us and demanded we leave.

My dad, who was standing up and is obviously taller than me, could plainly see the shopkeeper was lying about the lack of space. In fact, aside from the one couple he was ringing up, there wasn’t a single other customer in the store. There was plenty of room. Based on the look of horror on the shopkeeper’s face when he saw two wheelchair users roll through the entrance, the urgency with which he jumped up to ask us to leave, and his persistent arguing that we couldn’t stay, it was clear he just didn’t want us to patronize his shop, or assumed we’d cause damage, and so he thought it best to kick us out rather than finding a way to accommodate us.

I sort of get it, maybe. Power wheelchairs in a store full of fragile pottery are risky and the shopkeeper wanted to protect his goods, but the reality is that anyone could accidentally break something. At the very least, he could’ve offered to bring some pieces to the front for us. But no matter how many times we pointed out that turning disabled people away from your public business is discriminatory and illegal, the shopkeeper ultimately forced us away.

I just wanted to buy a ring. I wanted a taste of what New Mexico has to offer. I wanted to enjoy the late afternoon sun and the colorful boutiques with my parents. I love exploring new places. Yet it seems every time I try to embrace my independence like any other human being, someone stops me in my tracks and reminds me that disabled people are still not fully welcome in this world we inhabit.

In most cases, it’s structural barriers that prove unwelcoming. Steps and narrow entryways are warning signs to stay away. Because of this, I’m generally inclined to give my business to places where the architecture isn’t keeping me out. Of course, there are plenty of instances where I take one look at a place and can tell there’s no way I will actually be able to navigate safely or easily. But I have learned to make my way around in environments not designed with accessibility in mind. I have learned how to weave through curves and make sharp turns, how to roll forward at just the right angle and slip through tight spaces. Within the realms of accessibility, where I go is my decision to make.

And so, even as the sting of this encounter flowed through me, I was still determined to find a ring. We went to a shop around the block called de Colores Galleria. There, the owner was lovely, accommodating my mom and I as we narrowed down our jewelry options, never making us feel as though we were unwelcome or in the way.

While she helped us, my mom shared with the woman behind the jewelry counter what had happened at the other shop. The woman was mortified, apologizing on behalf of Old Town. “I’m so sorry,” she said. “That’s not good for Old Town. And that’s not good for you.” We appreciated that, and thanked her profusely for her hospitality before we left.

My mom and I felt compelled to thank the second shopkeeper because her kindness was such a refreshing change from our first encounter. That said, we were essentially thanking this woman for treating us like people. It’s a painful reality of my existence that I find myself expressing gratitude when people communicate with me in such a way that shows they see me as deserving of equality and respect.

As I sat down to recount this shopping debacle in writing, my stomach tightened at the thought that issues such as this – the ones I so desperately wish to see eliminated – are the ones on which I’ve built a platform and a career. The frequency with which I experience and write about ableism has become a twisted form of job security, because deep down I know I will never run out of stories to share. And yet, what I would give for an end to the writing fodder, as it would mean a world finally without encountering discrimination.

I am tired of the days when simple moments of enjoying life are shattered by someone else’s lack of understanding and acceptance. I am a tireless activist, but I am still tired.

I kept the ring that I picked from the second shop on my finger as I wrote this. It now has a place as one of the most bittersweet pieces in my collection, but I treasure it. I will wear it with joy not only because it is a reminder to keep up the fight even when I feel defeated, but also because of the other memories it holds: eating raspberries straight from the bush in my family’s backyard, the hazy mountain view surrounding us, twirling around the dance floor with my dad at my cousin’s wedding, peering out of a tram with my family as it reached 10,378 feet, and – most beautiful of all – being with people I love, who love me, and who welcome and accept me as I am.

Did I say I bought one ring? Okay, I meant two rings. And two pairs of earrings…

If there’s one thing you’d figure out right away from reading my blog, it’s that I eat, sleep, and breathe activism. I check my phone first thing in the morning and use it right before I fall asleep to find out what I missed in the disability/social justice world. (My sleep cycle is not happy about this.) I write about the disability experience like it’s my job – oh, I mean, because it is my job. And I love it. Really, I do. But sometimes, I can’t help wondering if advocacy has completely taken over my mind, disrupting my ability to take things at face value.

I’ll explain what I mean with an example. Last night, I was listening to the audiobook version of Bird by Bird, written by Anne Lamott. It’s a book on the art of writing, one I’ve been told is a must-read time and again. I found myself taken by the words, pulled in by the deeply human and incredibly poignant air of Lamott’s stories and advice. Then, a line stopped me in my tracks. Lamott shares what she tells her students when they ask her how to sit down to begin writing:

“You put a piece of paper in the typewriter, or you turn on the computer and bring up the right file, and then you stare at it for an hour or so. You begin rocking, just a little at first, and then like a huge autistic child. You look at the ceiling, and over at the clock, yawn, and stare at the paper again.”

I had to go back and listen to the words again. I Googled the quote, reading it over and over. I was troubled by the use of autism as an analogy for a writer’s struggle. Why was it necessary to use the term “huge autistic child” when surely a writer as skilled as Lamott could have used another comparison to convey the same idea?

This moment of pause happens to me nearly every time I encounter a reference to disability. I search for the meaning behind what was said. My mind runs through a checklist:

Is the language discriminatory?

Who might be hurt by it?

Why did the person write or say what they did?

How could the language be changed?

Does the language actually need to be changed?

I’ve basically trained myself to think this way. It’s become my gut reaction, this hyper-focus on how disability is portrayed. (Case in point: My first ever blog post was about the problems with the popular saying “There is no elevator to success. You have to take the stairs.”) And this is important. There are far too many times when language can be downright offensive or a total misrepresentation of disability. But language is rarely ever a clear cut matter. On the one hand, casually mocking disability is a practice still far too ingrained in our culture. On the other, I definitely can’t always assume ill intent because I know most people mean no harm.

The same goes for when discrimination is unspoken or subliminal. This morning, I was reading “15 tips for public speaking that apply to shining at work, and just about everywhere else” by Danielle LaPorte (because I’ve got some public speaking gigs approaching and I’m always up for more. Shameless plug). All of the tips were valuable and full of insight, but again, I found myself hung up on one line:

“High heels are a must. Because, it’s not how you feel, it’s how you tower.”

My first response was “Hey, what about me?!” I use a wheelchair, and I can’t stand up at all, let alone in high heels, to tower over someone, but that doesn’t mean I can’t command attention from a room while sitting down. The thing is, though, that I know that negative intentions were the furthest thing from LaPorte’s mind. She was trying to give advice, not trying to insult disabled people. But the reality is that disabled people are the world’s largest minority. There are approximately 1 billion of us. So, the fact that disability still hardly crosses mainstream consciousness can be tough to swallow, especially when I’m reminded of that almost everywhere, every day.

That being said, in the case of what Lamott wrote, the word choice was poor, but I see it was not meant to be cruel. And in the case of LaPorte, there was clearly a lack of awareness of the implication of her words, but again, it was not meant to be cruel. For both, I was still able to take away valuable messages, disability issues aside.

This makes me think: can there ever be a time where I can take words as they are, and not be concerned about the deeper meaning? I am certainly not ever willing to accept the use of downright insensitive, hurtful, or attacking language. (Like the “R”-word. If you use it, just…don’t.) But when can I take something at face value without feeling guilty about it?

It’s become instinctual for me to view everything through the lens of disability and activism. And that’s okay. It’s human. The work we do and the lives we live inevitably shape our worldview. But I’m learning not to let my worldview become too clouded, because even as we push through the fight for equality and acceptance (and as much as I wish this wasn’t an issue to begin with), I believe there’s joy to be found in things that are, with some unfortunate exceptions, beautiful or elegant or lovely – without fear that we’re not being responsible activists by appreciating something for the good it can still bring to our world.

What’s your take? How does your life shape your perceptions of the world around you?

I feel like I was just putting together a round-up and now, it’s already the end of the month again! Throughout April, I saved so many articles to potentially add to the round-up that I spent nearly an hour just sorting through them and narrowing down the list to put together this post. I’m sure you’re wondering why I didn’t just share everything, but I didn’t want to create an overwhelming list. You can definitely let me know if you want to see more in the coming months.

I realize this list is still quite long, but there’s some important reading here. So, if you’re pressed for time and can’t go through everything now, you should totally bookmark or Pin this post for later. Please let me know if these articles get you thinking! And, as always, if this round-up leaves you wanting more to read, there’s plenty of awesome previous lists for you at the bottom!

Disability News

Let’s talk about sex education and disability – I really wish we’d finally reach a point where it wasn’t newsworthy to discuss disabled people and sex ed. Everyone needs a proper sex education to make safe and smart decisions. EVERYONE OF ALL ABILITIES. I mean seriously, it’s the 21st century, people.

This Sign Language Rap Battle Is Unlike Anything You’ve Ever Seen – This video is a must watch! Jimmy Kimmel hosted the coolest sign language rap battle (and the only sign language rap battle) I’ve ever seen. I don’t know what motivated the writers of the show to do this, but I love this incorporation of Deaf culture in mainstream media and I want to see tons more rap battles like this.

Disabled woman says she was denied a haircut at local salon – I was just sad and frustrated reading this article. I don’t understand why things like this still happen in our society. Clearly, there’s still lots of work left to do to conquer discrimination.

Ohio Judge Orders Man to Hold ‘I AM A BULLY!’ Sign – When I first read this story, I thought “Yeah! This judge is awesome! And this bully totally got what he deserved!” But as I continued to follow the news coverage, I had mixed feelings. First, is this just a form of bullying to fight bullying? Second, was this an effective punishment, or did it just serve to make the “bully” more bitter? What would have been a better punishment? Perhaps some form of community service would have been effective? Let me know what you think in the comments!

Disability Blog Posts

When is it OK to Ask? – In light of the fact that I was just asked about my disability yesterday, and that I’ve been asked approximately a zillion times before that, I felt this blog post was pertinent. When is it appropriate to ask a person about their disability and when is it just flat out nosy and rude? I think context and language choice has a lot to do with it. What about you? Have you had any really positive or really awkward experiences where you’ve asked someone about his/her disability or been asked about your disability?

Autism, Like Race, Complicates Almost Everything – Racial discrimination coupled with disability discrimination can be incredibly frightening and it’s a very real problem. This powerful post gave me pause, for sure, and I believe it’s something we all need to consider.

Proud To Be A Grad School Drop-Out: #AutismPositivity2014 – I absolutely needed to add this 5th post to my round-up because it is in your face and fantastic. Too often, academia teaches that disability must be fixed, and instills within students a sort of superiority complex towards the population they’re working with. The author of this post speaks out against that and explains her pride in her decision to leave grad school. This is a must read.

Did I miss anything you think I should have shared in this round-up? Let me know! I’m always on the lookout for more disability-related reading.